Taking it down a gear

I know my bike needs a clean, but it's kind of difficult to do with pins & needles fingers!

Yesterday Sam and I went out for a ride, taking our favourite route out to Chipping Norton and stopping for a fine slab of carrot cake and hot chocolate before swinging 180 degrees and enjoying the tailwind home. Bliss!

However, one thing was painfully apparent. Two rounds of chemo down and one pair of steroid-wasted legs do not make for a happy marriage with a 12-23 cassette. (For those of you not finely acquainted with the intricacies of bike bits, these numbers equate to how many teeth you have on your rear wheel gearing and hence how easy it is to turn the pedals. In my case, erm not so easy any more!)  There was only one thing for it – this morning I trotted off to the bike shop and begged for the biggest, toothiest dinner plate-sized cassette they could possibly fit. The amazing guys at Beeline road shop did a fantastic job and kitted me out with a 28, five extra gears which my little legs will no doubt wholeheartedly appreciate.

Having done regular exercise since the day I rocked up in Oxford and unwittingly got sucked into the weird and wonderful world of rowing, with its 5.30am starts, circuits sessions and daily floggings on the river, it’s quite a strange sensation to now be watching my bionic fitness ebbing away, to be out of breath on little inclines, to not be able to turn my gears any more. And knowing that come 6 months’ time, I’m going to have to tackle the long painful process of building my fitness back up from scratch.

But I’ve always been one that likes a challenge. And besides, it hasn’t always been this way. It may surprise you to discover that the ‘duracell bunny’ only came into existence relatively late in life. Being perenially dwarf-like in stature compared to my classmates and severely challenged when it comes to hand/ eye coordination, PE at school for me was not my finest hour. Indeed my overriding memories are being picked last for virtually everything, punctuated with the odd mocking comment along the lines of ‘well you could try running through their legs’ or ‘perhaps you’d be better off just being ball girl’. Looking back though, two flashes of the indomitable spirit shone through:

1) Gymnastics class, aged ~8. Rumour had it that one of the coveted ‘green cardboard good marks’ would be awarded to anyone that scaled the top of the ropes that hung from the high ceiling of the school hall. Naomi duly scales rope; PE teacher duly ignores Naomi while tending to the more talented members of the brood. Naomi clings on – for a good 5 minutes – and refuses to descend until her presence is noted and receipt of ‘good mark’ secured.

2) The bleep test, aged ~16. For those of you that never had to endure this peculiar brand of torture at school, the bleep test basically involves running between two markers, arriving at the second one before the bleep sounds. And of course the intervals between the bleeps contract and contract so you progress from a lolling walk to an increasingly desperate sprint. To the immense surprise of the ‘ye of little faith PE teachers’, I was the last man standing when they inflicted the bleep test on us.

I’m a great believer in the fact that sheer will and determination trumps adversity every time. And so far I’ve not been disappointed.

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Two down, three (or six) to go

Thanks Roberta and Owen for my lucky Brazilian bracelet

Tuesday 21st, my second drip chemo session done and dusted. It all ran pretty similarly to the last one: we allowed a stupidly conservative amount of time to get to the hospital and arrived stupidly early; we rock up to the cancer DTU unit feeling smug and organised only to be told that they’re running late and can we please go back to the waiting room; after further probing it turns out that ‘late’ means ‘at least an hour behind schedule’ and we end up at the League of Friends café drinking tea and eating belgian buns 🙂 Not that the delay bothers us in any way – it’s not like I was planning to rush off and play a set at a rock concert when I got out of the hospital.

Two key lessons learned during chemo session 2:

1. A chemo session is not the best occasion to begin a new book, especially if said new book is so painful to read that after 69 pages of self-enforced persistence, you feel like throwing it across the room, except you’d probably do some serious damage to people that could really do without adding head injuries to their current list of medical conditions. You then resort to reading the summer editions of ‘Woman’ magazine, which tell you in good faith how a healthy diet of lots of fruit and vegetables and regular exercise will cut your risk of succombing to cancer by 3 billion percent and you also feel like throwing that across the room, but again resist due to afore mentioned reasons. You then come to your senses and remember you have a devoted loving boyfriend sitting in the chair opposite who is considerably more mobile than you and duly send him off to equip you with a newspaper. Note the smile in the picture above 🙂

2. Two hours of Oxyplatin drip makes you very very hot. This feeling is exacerbated by the fact that the drug makes you hyper-sensitive to cold drinks (your throat basically closes up), so the only fluids you can take on are hot beverages. Wearing a tight woolly jumper which can’t be removed because of the needle in your arm and then spending 2 hours sweating profusely is not the way forward. Next time I will remember to wear a hooded top and leave the thermals at home.

I was told that the side effects you experience in round 1 are pretty representative of what you can expect for the future rounds – with the caveat that you’ll of course get more tired with each round and your skin tends to get drier and sorer with subsequent courses of treatment. Certainly this seems to have played out for me – I’m still very fortunate in not seeming to feel nauseous and the hair seems to be staying firmly in place. Once again I have the super-sensitive pins & needles hands and face and can’t tackle cold beverages without my throat tightening but last time this had faded by about day 4 and I’m hoping the same will hold true again. I have to unfortunately go back to taking the dreaded steroids for a few days but on a ‘ramping down’ dose (4 down to 2 down to 1 and then 1) so just a few more nights of insomnia to bear. So all in all, really no drama at all.

Once I’ve got three more courses under my belt I get scanned and they decide whether I need the last three. This week I discovered that – of all places in the bowel to have cancer – apparently the upper bowel is your prime choice because they have lots of it to work with when they operate. Which in layman’s terms means better recovery and no need for bags and other external ‘digestion devices’ post-operation. Nice to know.

Treatment aside, I’m continuing to keep myself amused by getting lots of fresh air and sharing good times with my mates and family members. Haven’t even broken the shrink-wrapping on ‘Interactive Mountain Biking for Xbox Kinect’ yet so I must be keeping busy!

As always, thanks everyone for your well wishes and your lovely gifts. They really brighten up my days. So far so good indeed 🙂

Sam's butter dish, uploaded by popular request

Something old and something new

This week was my week off the drugs.

Last weekend Sam and I went to Summertown’s ‘Unique Creations’ and went pottery painting. Not an activity we would probably have ever considered pre-diagnosis but it was really good fun! I settled fairly quickly on a vase as my ‘canvas’ as we’ve been blessed with so many lovely bunches of flowers lately and have ended up resorting to putting them in jugs, jars… anything we can find.

Sam, after a lot of protestations about how ‘at school he only ever drew stick men’, followed by a sustained period of procrastination/ research, settled on a butter dish, which he painted in beautiful striking Spanish colours. We spent 3 hours in there, perfecting our pieces and had an absolutely stonking time. Just goes to show how much fun you can have when you bite the bullet and give something new a punt.

Meanwhile, I’m continuing to tick along surprisingly well with the treatment. The good news is that even after just 1 round of chemo, the swelling is already starting to come down and my appetite is coming back. So much so that I’ve actually been able to stop taking the dreaded steroids (which were to ease those symptoms). This makes me very happy, firstly because the chemo is clearly doing something positive. Secondly because the 2am-7am night-owl episodes have stopped and thirdly because – as I discovered at my last consultant appointment – they are major muscle wasters. Now that would explain why my ‘cycling curves’, as I used to refer to them, have literally disappeared overnight. To quote Sam ‘my God, your calf muscles actually look quite normal now’.

Talking of cycling, with the sun shining today and a beautiful day stretching out before us, today Sam and I went out for a spin. For sure it was a lot slower – and involved a lot more cake – than my old style rides but it was so lovely to get back on my bike and in the fresh air and to feel so alive 🙂

I’ve had the most amazing time this week, making the most of the opportunity to get out and about. I’ve shared some lovely moments with friends and family, adding lots more positivity to the bank as I prepare to hit round 2 of chemo on Tuesday. Bring it on, this new life really ain’t so bad.

 

New horizons

So it’s been a crazy few weeks, with quite a few step-changes – and not all of them bad ones.

Life as of Feb 2012

Big thanks to Raewyn for the beautiful homemade quilt & muffins, & to Sarah, Gen & Abbie for the books

Having rediscovered the pleasure of using my two feet rather than my two wheels to get out and about in the fresh air, it became fairly apparent that my £20 bargain basement SportsDirect skate shoes weren’t really up to the job. Especially not when combined with the dicy mixture of slush puddles and ice that the snow has left in its wake. Trendy they might be, but the top-to-toe mud plastering from falling over kind of detracts from the ‘coolness’ of the look. So I decided to treat myself to a proper pair of walking boots. Waterproof, breathable and comfy and a bargain £20 down from £60 in GoOutdoors (ok so maybe not everything has changed in my psyche!). I’m definitely getting a lot out of my walks these days, they give me something to look forward to, make me feel like a person and not a patient, and really bring home how much beauty there is in the world if you take time to stop and find it.

Getting used to all of these changes isn’t as hard as I thought it would be. I’m almost through my first 2 weeks of the chemo cycle and feel like I have a decent measure of what I can expect. No doubt I’ll get more and more tired and weak as the cycles go on but I really feel like I’ve got away very lightly on the side effects front. I haven’t suffered at all with nausea and apart from the ‘going virtually blind’ blip which fortunately had nothing to do with the chemo drugs themselves, everything else is totally manageable. I’m looking forward to the time when the swelling starts to come down, I no longer look quite so ‘pregnant with alien’ and can stop the steroids but equally I recognise that it’s early days and I have to be patient and let things run their course.

When I was at the Maggie’s centre earlier this week, the lady congratulated me for adopting such a positive attitude and outlook. But the honest truth is – how can I be anything but positive? I’m living in a city with some of the most cutting edge medical facilities around. I have an action plan, a tried and tested course of treatment and all I have to do is take the tablets and trot along to the hospital when the brown envelopes tell me to. And I have friends and family queuing up on my doorstep to entertain me, bringing me some of the most spectacular homemade creations I have ever witnessed. Not to mention the support of superhero Sam, the wind beneath my wings.

I’ve said it before and I’ll say it again. I’m a very lucky girl.

Kindness and cake

My day started with a homemade cake delivery from my dear friend Bryony. When a day starts like this, how it can it be anything but sunshines and rainbows?

Bryony helped me set off on my merry way to the Churchill hospital. I got the bus from the Park & Ride and sat on it, face wrapped up in bandana like a Japanese tourist with swine flu paranoia. (Days 5-14 after chemo your immune system dips substantially so you have be really careful about exposing yourself to nasties.) No doubt the people on the bus thought I was mad but then I’m kind of used to inspiring that reaction in people!

At the hospital, I had a first meeting with my assigned Macmillan nurse, Harriet. Yet another great arm to the awesome cancer treatment service we have in this country – you have your consultant and attached nurse who deal with the nitty gritty of dealing with the alien itself but you also get to lean on the Macmillan guys, who work with your GP to help you deal with the day-to-day stuff like the side effects of your poison cocktails, your emotional needs and so on. I had a good old chat with Harriet who is going to look into tweaking my anti-sickness medication, which has been firmly established as the cause of the ‘blind as a bat syndrome’. Fortunately, since I’ve stopped taking them I haven’t felt sick and more importantly my vision has come back so feeling a whole load better on that front.

Next stop was a discovery of yet another amazing ‘benefit’, if that’s the right word, of being a cancer patient. I went to the Maggie’s centre, based in a portakabin on the hospital site – this amazing hub of support, advice and friendly faces for cancer sufferers. Another chat over a hot drink and a biscuit later, I discovered that I am not the only freak sporty 31 year old with bowel cancer, there’s actually another one called Christian that dropped in the other day. So there you go, proof again that there are no hard and fast rules when it comes to this odd & insiduous little disease.

http://www.maggiescentres.org/about/what_is_maggies.html

While I was there, I signed myself up for one of their free ‘2 hour pampering and make-up masterclasses’ in March. Apparently you get not only a full blown tuition session on self-beautification, but also £200 worth of goodies donated by leading make-up companies. I’m sure this news will cause no end of amusement to those of you familiar with my typical grooming routine – e.g. splash face with water, let hair dry by flapping through the vents in my cycle helmet when I ride to work in the morning – however, if there’s anything I’ve discovered over the past few weeks, simple pleasures come in all shapes and sizes and you have to seize them while you can.

It’s funny in a couple of weeks how your perspective can change. I’ve swapped two wheels for two walking shoes and been on some of the most beautiful walks with Sam, out and about around our village. Happiness is a homemade apple & blackberry crumble with custard in a cosy country pub sitting opposite the man you love. Happiness is sharing the excitement of an extra inches of snow in Tackley compared to Oxford on a snowy countryside walk with two good friends. Happiness is realising that you’re surrounded by people you love and that love you back.

The journey begins

I’m writing this at the rather antisocial time of 3am in the morning – that’s steroids for you. Having spent most of the day doing my best to outdo the cat in fallling asleep in random places all over the house, I now find myself wired to the nines in the wee hours of the morning. Ah well, such is life.

Chemo day 1 was on Tuesday. All remarkably civilised – you sit in a room in comfy chairs with a gang of similar patients and get ‘plugged in’ Matrix stylie to a drip for a few hours.

Perhaps not surprisingly, given it gets pumped full of poison for 2 hours, you end up with quite a dead and useless arm afterwards… but those of you that have ever seen me on a tennis court will know that my similarities with with the Williams’ sisters begin and end with the grossly oversized calf muscles… and hence a dead arm is not likely to be a major impediment to my day-to-day life.

Other side effects noted so far include extreme pins and needles in fingers made worse by the cold – thanks Great Britain for choosing this moment in time to plunge us into a -6 degree siberian winter. The anti-sickness tablets also have the rather unpleasant effect of making me blind as a bat so I’m hoping to get them switched when I’m next in. Until then, it’s Kindle with remedial type size all the way.

I’d be lying if I said this transformation from ‘duracell bunny’ to ‘myopic sloth’ was easy, but Sam and I are taking things day by day as best we can. The countryside around our village of Tackley is being well-trodden as we strike out into the outdoors for our daily dose of fresh air. It’s not quite cycling but it makes a pretty d*mn good substitute for now.

And after all, as this post is entitled, this is just the beginning. It’s all about the end point really.